Monday, June 1, 2015

Apraxia: ideas to help speech

In January 2015 at age 3 1/2, Presley was given the diagnosis of "severe apraxia".  WedMd says this about it:  "Developmental apraxia of speech is also known as childhood apraxia of speech. This condition is present from birth, and it affects a child's ability to form sounds and words."  In other words, they may know what they want to say, but the words do not come out.  Up to 40% of children with Down syndrome are diagnosed with it.  The therapist said she wasn't sure though, because the few words Presley did say came out consistently the same way and same tone. The therapist said apraxia of speech typically says the same word a little different each time.  Presley could communicate her needs, but there had been very little actual speech from her.  After her evaluation, her speech therapist quit, and we began trying  a few different interventions.  By June 2015 (less than six months later and just a month before her 4th birthday), Presley went from silent gestures to babbling, reading her word cards out loud, imitating us, and trying to make her big sister laugh. Here is a video of Presley and her sister Payton working on word cards when she first became interested in speaking: https://www.youtube.com/watch?v=dmImQzFf9Jc  (2015) What made Presley begin talking?  She did.  When the time was right, she began talking.  The articulation needs work, but it is coming along great and I am thrilled to have words to work with.  Presley was recently evaluated and is reading on a 2nd grade level, so I knew cognitively she was well prepared, but getting her to form words was completely out of my control. So, we continued the course of laying a solid foundation for good speech. We still have a long way to go, but hearing her sweet voice is a true blessing.  I hope this list of our interventions helps someone else.

1.  Geminii - http://gemiini.org/ - we began this in January 2015 when our SLP bailed on us.  It seems to really give Presley the confidence to sound words out.  They use repetition and lots of close up videos of someone saying the words. Great program with great results. 


2.  Neurodevelopmental program - we use NACD (http://www.nacd.org/) but there are others like ICAN (http://www.senc.us/3.html) so find a reputable evaluator close to you.  NACD has guided me every step of the way.  They believe it is all about INPUT, INPUT, INPUT!  Keep expanding the receptive language and the expressive will follow.  Most of the ideas on this list are from them.  We have been with NACD since Presley was six months old.


3.  Homemade speech videos using family.  Here are some of ours

Video 1 - basic initial speech sounds and reading two simple books.  8 minutes long. 


Video 2 has basic speech sounds, alphabet letter sounds, flip charts, reading sight words, and more.  It is over 30 minutes long.



      Video 3 includes following directions, many basic words shown with a close up of the mouth, reading, sequencing, different emotions, brushing your teeth, reading, five senses, chores, days of the week, months of the year art, and pat a cake play. It is 34 minutes long. 


     
Here is a post about making videos:  http://www.3of21.com/2014/03/homemade-videos-to-teach-everything.html


4.  Oral Motor therapy techniques:  we use NACD and talk tools equipment such as bite blocks, horns, straws, etc..  Have an evaluation to ensure everything is strong enough with proper placement for speech.

5.  Sequential Processing:    we will always continue to pursue the next higher level of processiing.  Bob Doman has a great video that goes into detail about how processing affects language development.   I also wrote a post about what it is and examples of how we do processing that can be found here.   Basically, if a child is one year old, they can process and hold one piece of information, two years old equals two pieces of information, etc....  We have to work on processing or they will not be able to hold onto those pieces long enough to string their words and thoughts together. Here is Bob's video:




6.  Brillkids:  wonderful reading program that is kind enough to offer large (or free) discounts to children with special needs.  It says the word, shows a photograph of the word, and then shows a video of the object or action. Very easy program to use.  We began this program at 6 months old. http://www.brillkids.com/ 


7.  Diet and supplements: We have used Bioray Shine, EGCG/teavigo, fish/krill oil and many other supplements.  We also include lots of healthy fats to feed the brain such as avocados, almond butter, coconut oil, etc...  We are gluten free and dairy light with some cheeses.  The gut is known as the second brain and has a direct influence on cognition and "brain fog".  I can't say if any one supplement worked for us, but we continue to support her body by testing for deficiencies/issues and adjust accordingly.   Here is an example of our breakfast and morning smoothie routine.


8.  Reading books - this was very important to me as I wanted to create as love of reading for both of our girls.  We even made some videos of my 5 year old reading to Presley and play it over and over. The average household has only ten children's books, we have hundreds. Our goal was 10 books a day. We make a lot of experience books, similar to our homemade videos, that include pictures of the girls and initially only simple one to two word phrases below each.   You can make one about their typical day or a trip to the zoo, and document in photos each step along with word cues to encourage their participation in reading.  We have a basket of books by the potty and sometimes we read the same story over and over, but each time we talk about what the characters are doing, what they are probably thinking, what their facial expression looks like, etc...

Sometimes we made videos (I have visual learners obviously) with us just reading books.  Soon Presley began mouthing words and reading along with the video.




9.  Music - Presley loves music, so we used several different sources.  Here is an article explaining how music stimulates language development in DS. 

      *  Talk it, Rock it CD's - (https://www.talkitrockit.com/shop/)  fun,    
          interactive music CD's with a good beat to sing to.   They have a few videos on youtube, but
          we listened to the CD's all the time in the car to have pure auditory input.  She has never seen
          these videos, so she is not playing a video in her head when she hears it. 





      *  Readeez -  http://www.readeez.com/ videos with words and singing.  Here is their phonics song.  They have many more videos and DVD's and my girls have really enjoyed all of them.

 
 

Mother goose club Presley's favorite to sing and dance to on youtube:



        


10.  Speech cards and word flip books - http://www.superduperinc.com/default.aspx

Main Product Image


11.  Exercise:  there are so many studies that link exercise with increased cognition.  Here is one article:  http://www.disabilityscoop.com/2013/03/07/can-exercise-down-syndrome/17448/  NACD also encourages encouraging learning while the intensity is high (while they are having fun).  We would go for nature walks and draw alphabet letters in the dirt as we walked and name everything we saw.  There is a saying well known within the DS community of "two miles of walking equals talking".


12.  Speech apps:  NACD has a good collection for the ipad: http://nacd.org/speech_sound/apps.php  We also used articulation station, Tiga talk, and Speech 4 Kids.  Here is a good list from apraxia-kids website.
Naed_ApraxiaApraxiaPictureSoundCards



13.  Ears:   Stay on top of hearing, watch out for fluid retention and ear infections with any congestion.  You can request an tympanogram from your Pediatrician when your child has congestion and again after it has resolved to see if fluid remains.  It tells you whether the tympanic membranes is able to move or not.   Routine audiograms should be conducted to assess hearing. Children will obviously have difficulty repeating sounds if they can not hear them clearly.


14.  The Listening Program: addresses auditory tonal processing http://nacd.org/speech_sound/the_listening_program.php


15.  Stay informed: Read this great article by Christine with her beautiful daughter Olivia on Andi Durkin's blog for more information and what worked for them: http://dsdaytoday.blogspot.com/2014/03/treating-apraxia-in-children-with-down.html



16.  Mango or papaya powder - Dixie Lawrence of Trisomy 21 Research suggests some children with apraxia have a FOXP2 mutation.  She states "the development of FOX2 neurons is a process, first they must be born then migrate, then connect to other neurons, then survive" so changes may occur slowly.    This has to do with low histamine levels typically seen in DS and that raising these levels contribute to global advancement in development along with speech.   Insomnia seems to be a common side effect when titrating for effect.  Learn more on her Facebook page Trisomy 21 Research.


17.  Feuerstein approach - I am not as familiar with this, but I have seen it on several posts with positive reviews.  Here is an article with more details.


18.  Positive interaction- 

Dr James MacDonald with Communicating Partners has a wonderful website here.  He believes "Regardless of the number of professionals, children will learn to communicate best in their home lives. Parents have the greatest opportunity to teach their children how to communicate and yet there are very few resources available to parents for this purpose, This web site provides tested resources for building strong social relationships with children with delays".

 - We also use puppets, dolls, and toys for play interaction.   I will hold one doll and say "Hi, my name is Doc, what is your name" and Presley will answer "Hi, I am Elsa".  We then go to "How are you?" and she will answer "I am good".   Sometimes I played this with my 7 year old first in front of Presley, and it would give Presley the cues as to what she should say.  The other day Presley (now 6 years old) was walking through the grocery store and told a stranger "Hi, how are you" they answered back asking how she was and she responded "I am good, thanks" and then she kept walking. My 7 year old likes to use the dolls to act out scenes they just saw on tv, such as using Daniel Tiger or Strawberry Shortcake figures to act out a song they just sang or a part they thought was funny.

- Ask about their day.  Dad comes home and asks Presley what she did that day.  Sometimes he has to give prompts such as "how did piano go today" or "did you get wet today" when she had played in the pool.  If we went on a nature walk, he will ask "what color flowers did you see today", because he knows we talk about the wild flowers we see.  Recently, we took pictures of all the wildflowers we see on our usual walking area.  We then used an app called Plant Net to identify them.  I put the pictures, along with the name of the flowers, into a small book using Microsoft word.   Presley now says the names of the flowers as we pass them.

- Say good morning.  Every morning, as we leave the farm, I say "good morning cows", "good morning donkeys", "good morning creek" "good morning trees" and so on.  Presley likes this and began saying it to things she saw too.   So she was speaking, naming things, and paying attention to her surroundings. 

Anticipatory speech.  In one of the above speech videos, I would practice anticipatory speech.  I would say something like "Mommy and Daddy, Mommy and Daddy, Mommy and Daddy, Mommy and .................".  I would pause for a moment to allow her to process it and come up with the word "Daddy".  If she didn't say it, then I would fill in the blank and celebrate.   We also used anticipatory speech for the nursery rhyme songs she loves, such as "the wheels on the ........" and just wait for it.

State the obvious.  We walk outside, I say "it is cold" "it is hot" "it is windy" "the sky is pretty blue today" "it is cloudy".  We gives names, descriptions, and functions of everything we see.  We also make lots of homemade videos describing things like this, so she gets lots of repetition.   One video, I walked around the kitchen and named everything in the kitchen and what it does.  Soon, she was grabbing items out of the drawer and naming them.  When we go outside and the wind blows in her face, she will automatically say "it is windy".


Role modeling -  we practiced a lot and recorded many of the interactions I wanted Presley to know.   Sometimes I would practice with my 7 year old Payton first.  There is also a great set of videos called Watch Me Learn that teach key developmental and social skills.


- Visualization - several moms have recommended products for visuals and manipulatives like these from Lakeshore Learning.   This can be used for creating carrier phrases using sentence strips, such as "I want.... I need....." and allow them to fill in the blank.   Another tip from Jane Winans  "Get a poster board and script out a good retelling of an event, but have blanks that she fills in with word cards at first but then from memory afterwards. Today I went to _____ (Disney) I saw _______. I rode on _______. I ate _____. My mom and I were _____ (having fun - smiling - being silly - hot ) I felt ___ today at _____. Do this every day until it becomes more ingrained."



16.  So Happy to Learn - several moms have recommended this program by Mrs Brown.   She has a monthly curriculum she sends to work with your child on math, reading, and writing.   She is genuinely interested in helping us teach our children and make them successful.  


17.  Time:  you can do everything on this list, but ultimately they will decide when the time is right.  This is difficult when you know all the pieces are in their proper place, but nothing comes out.  Stay strong and consistent, the end justifies the means.  Continue laying the foundation with the right input, good sleep, good nutrition, good exercise, good hearing, good health, and time.


17. QRI Laser/Reflex integration:   UPDATED October 2016, we had a very positive output of speech from using the QRI laser.  We began integrating the reflexes using the laser then added the TALK program 3 months later, and then the helmet 3 months after that.  Read more about the laser here:  http://www.3of21.com/2016/10/information-about-cold-laser-low-level.html

Here is my review about the QRI helmet and how it helped us:http://www.3of21.com/2017/02/qri-helmet-information-review.html


Update July 2017:  Presley just turned 6 years old, she is speaking in sentences up to ten words at a time and reading on a 4th grade level.  She is singing entire songs.  She is asking "what are you doing", "where is the doll", "what happened", "what is that" and more.   She is telling her own version of knock knock jokes.   She is telling me when she is hungry, thirsty, tired, needs a break, ready for bed, wants a bath, and wants to go swimming.  She tells me if she got hurt and where it hurts.  She tells me "I love you".   Does she have perfect communication or speech? No, but we celebrate moving forward, one word at a time.


Many blessings in your journey,
Robin


Disclaimer: Please discuss with your physician and/or therapist as to what may be the best for your family member.   These are only some of the ideas that have helped us, but each child is different.   My goal is to compile resources together to help others.